Reflect. Recharge. Refresh. Cystic Fibrosis & Mental Health resource guide

1. Reflect. Recharge. Refresh.Cystic Fibrosis & Mental Health resource guide By: Emily Schauf, PPC Social Work Trainee April 24, 2018

2. Presentation Agenda • Background and refresher on Cystic Fibrosis • Highlight research and data addressing Cystic Fibrosis and Mental Health • Practice basis and current practice in Pediatric Cystic Fibrosis Clinic – mental health intervention • Implementation of GAD-7 and PHQ-9 • Implications for intervention • Mental Health and Cystic Fibrosis Resource review • Relation to MCH Leadership Competencies • Conclusion and invitation for feedback

3. What is cystic fibrosis? • Progressive and genetic disease without a cure • Tenacious lung infections and limitations on the ability to breath over time • Symptoms: • Persistent coughing (phlegm at times) • Wheezing or shortness of breath • Poor growth or weight gain • Frequent greasy, bulky stools and/or difficult bowel movements • Male infertility Cff.org. (2018). Cystic Fibrosis Foundation. [online] Available at: https://www.cff.org/.

4. CF Treatment and management Demand • Demands of the condition; • Daily adherence to treatments • Airway clearance • Inhaled and oral medications • Pancreatic enzyme supplements • Clinic visits to PCP and CF Center • Emotional and mental demands of managing a chronic illness such as Cystic Fibrosis that does not have a cure • Cff.org. (2018). Cystic Fibrosis Foundation. [online] Available at: https://www.cff.org/.

5. Cystic Fibrosis and mental Health • A balancing act; • Managing all aspects of Cystic Fibrosis • School • Relationships • *Individuals with Cystic Fibrosis are two to three times more likely to experience depression, anxiety or both, compared to their healthy peers. • Depression and anxiety are two things that can make it tough to take care of oneself, including adhering to daily CF treatments and self-care. • Cff.org. (2018). Cystic Fibrosis Foundation. [online] Available at: https://www.cff.org/.

6. Untreated depression, anxiety or both can affect both your physical and emotional health and interfere with your ability to take care of yourself.

7. Additional Statistics and Research Worth Noting • *Adolescents and young adults w/ a chronic illness experience elevated risk for suicidal thoughts and behavior as compared to their healthy peers; suicide is the second leading cause of death for the age group. • Ferro, M. A., Rhodes, A. E., Kimber, M., Duncan, L., Boyle, M. H., Georgiades, K., & MacMillan, H. L. (2017). Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness. Canadian Journal Of Psychiatry, 62(12), 845-853. doi:10.1177/0706743717727242 • *Nearly 2/3 of youth with depression and anxiety are not receiving the treatment and services they need, as suggested by Mental Health America (2018).

8. PracticeBasis • Psychosocial assessments within outpatient and inpatient settings • Are there any supports in place already? What about natural supports? • Assess and council on emotional aspects of living with chronic illness • Validation of feelings and normalization of emotions. • It is okay to have up’s and down’s! • Educate on ways to cope with stress of condition, how it effects life and family • What seems to help? Is there anything you already do? • Encourage discussion with PCP with hopes of addressing mental health concerns via therapist referral or medication • Can provide information on local mental health specialists and agencies

9. Current Practice • Everything previously mentioned with the addition of depression and anxiety screening for patients aged 12 years and older following recommendations by CFF. • Utilization of GAD-7 and PHQ-9 • What does that look like in clinic? • The question of, “What next?”

10. Why this project? • Implementation of GAD-7 and PHQ-9 in Cystic Fibrosis Clinic shows implication for intervention following identification of a mental health problem • Immediate counseling on coping • Providing information on next steps • How to reduce the “gap” in identification of issue and accessing mental health services • Consideration of barriers to accessibility • What is my role as a social worker and leader? • Importance in normalizing discussion of mental health for adolescents and teens

11. Resource Content • Overall theme of normalization • Mental Health Terms and Definitions • Cystic Fibrosis + Mental Health • Relaxation techniques with a focus upon mindfulness and healthy sleep • Digital therapy app suggestions and online mental health resources • Suicide hotline, crisis text line, and crisis intervention hotlines information • Health Insurance Basics 101

12. Considerations Prior to Resource review • Seeing as this is not a final product, I welcome feedback and suggestions for improvement following presentation! • Further consideration of readability • Prior examination of readability • Resources for further analysis? • Challenges in that the intended audience involves a wide age span • Ages 12 - 21

13. Resource guide • https://issuu.com/emilyschauf94/docs/mental_health_resource

14. MCH Leadership Competencies What about leadership competencies?

15. MCH Leadership CompetenciesCritical thinking  • Identify issue - gap in practice • Explore and evaluate relevant information • Evidence-based practice • Began with identification of relationship between mental health and physical health, followed by recommendation for screening for depression and anxiety as best-practice • Integrate that information into development of resolution • This resource!

16. MCH Leadership competenciescommunication • Verbal, non-verbal, and written communication • Encoding and decoding of message • Presenting information in a way that is age-appropriate and easy to understand • Message and Delivery • What is being said and how it is being said • Clarity of message and other considerations • Literacy and readability level • Interdisciplinary communication • Inviting input, knowledge, and feedback from other healthcare professionals

17. Mch leadership competenciescultural competency • “MCH recognizes the implications of cultural competence, which is dynamic, ongoing, and a long-term commitment.” • Identification and critical analysis of barriers to care; cultural, ethnic and socioeconomic factors • Beliefs and values surrounding mental health and discussion of • Recognition that culture and diversity is wide and includes not only race and ethnicity, but gender identity, disability status, etc. • Considered this breadth when creating this resource – gender neutral language, color, and approach

18. MCH LEADERSHIP COMPETENCIESMCH Knowledge Base/Context • “Promotion of the health and well-being of all women, children, adolescents, fathers, and families, especially in disadvantaged and vulnerable populations.”

19. Mch leadership competenciesself-reflection • The value of self-reflection; • How do my beliefs impact the way I interact with families around topics of mental health? • In creation of this resource guide? • The impact of beliefs and past experiences on negotiation and leadership styles. • My belief that mental health is extremely important – lead me to the creation of this Capstone project. • Ethical principle for social workers = Service!

20. MCh leadership competenciesworking with communities and systems • Importance of collaboration • Cystic Fibrosis Foundation • Input from additional healthcare professionals • “The successful MCH leader thinks systemically about the complexity of policy, practice, and research challenges.”

21. Conclusion • Thank you! • I welcome feedback and suggestions for improvement. • Questions?

22. Resources Ackerman, C. (2018). Mindfulness Activities for Children and Teens: 25 Fun Exercises for Kids. [online] Positivepsychologyprogram.com. Available at: https://positivepsychologyprogram.com/mindfulness-for-children-kids-activities/. Cff.org. (2018). Cystic Fibrosis Foundation. [online] Available at: https://www.cff.org/. Cff.org. (2018). Emotional Wellness. [online] Available at: https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness/. Ferro, M. A., Rhodes, A. E., Kimber, M., Duncan, L., Boyle, M. H., Georgiades, K., & MacMillan, H. L. (2017). Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness. Canadian Journal Of Psychiatry, 62(12), 845-853. doi:10.1177/0706743717727242 Leadership.mchtraining.net. (2018). MCH LEADERSHIP COMPETENCIES. [online] Available at: https://leadership.mchtraining.net/. Mental Health America. (2018). Mental Health America. [online] Available at: http://www.mentalhealthamerica.net/. NAMI: National Alliance on Mental Illness. (2018). NAMI: National Alliance on Mental Illness. [online] Available at: https://www.nami.org/. Wisconsin Department of Health Services. (2018). Regional Centers for Children and Youth with Special Health Care Needs (CYSHCN). [online] Available at: https://www.dhs.wisconsin.gov/cyshcn/regionalcenters.htm. Sleepallies.org. (2018). Healthy Sleep - American Alliance for Healthy Sleep. [online] Available at: https://www.sleepallies.org/healthy_sleep.php.